Hi I'm new here. My name is Jake and I'm 28 years old.
I have just begun experiencing Rheumatoid-like symptoms this year (I've
had 2 flare-ups) and it definitely has me floored and frightened. My
rheumatologist has just tentatively diagnosed me with Still's Disease
(also known as adult onset juvenile rheumatoid). From my reading this
seems to match my symptoms more accurately than regular RA. Just
wondering if there were any others on here with Still's (I know it's
very rare) and if they had any guidance to offer.
Also I had a question about prednisone. I'm currently taking 20mg a day
which enables me to make it through most of the daytime but then the
joint pain and fever start coming on at night. My rheumy wants to bump
this to 40mg a day and hopefully knock out this flare-up. I'm pretty
worried about the side effects and wondered if people on here thought
40mg was a lot and if I would probably experience the weight gain or
"moon face" or any other side effects.
Thanks for any help you can give me and I hope I can be helpful back.
Hi Jake, I was diagnosed with Still's Disease at 14 and yep, it's pretty scary stuff in the beginning, especially as the systemic symptoms can be quite impressive! I've had a few tough times with it but they've mostly been down to mistakes made with treatment choices, ie. being undertreated - one of the best things to get on top it quickly is a high dose of Prednisone - I started on 80mg ten years ago and have been up and down since according to how well I am. Usually between 5-10mg, sometimes up to 30mg when I'm having a 'mini-flare' and then if I ever get really sick (which touch wood I haven't for the past 5 years I've been with my current RD) it gets put up round the 60-80mg mark or IV'd. I have a love-hate relationship with the stuff like most people here, but over the years I've learnt that I do need those higher doses to get through rough patches, if I didn't then I'd be in a right state!
For the most part those doses are only temporary and you should be given other long-term treatment options such as Disease Modifying drugs or Biologics to give you the best quality of life and prevent joint damage- I currently take Cyclosporin and Enbrel alongside the Pred and it's a pretty successful combination for me. I manage to live a pretty normal, active life (I can't do as much sport as I used to put still try hiking, horse riding and rowing when I can!) - I'm studying full-time at uni, go out with friends etc - you might find you don't have the same stamina as everyone else but you do learn to adjust to that over time, it can be frustrating early on but it's just a learning process about knowing how to balance activity with rest. I know with Still's especially, over exertion can knock you for six!
As for increasing the Pred and the effects of that, having experienced a number of quite serious flares over the years I've learnt that it definitely is best to knock it on it's head with as high a dose as the doc suggests, no matter how scary it sounds. Truth is, Pred usually does work, after a few days on 40mg you could well feel like a different person. You might experience some of the fluid retention and moon-face at that dose but it really depends how long you stay at that level for - even if you do, it disappears once you reduce again (although it is the thing I dread most, what being 24 and all!). The other things I get when I increase is a heartburn and headaches, but again, it's worth it if it does stop the flare in it's tracks.
Anyways, wow I've written quite an essay there - hope it helps some; if you have any other questions just send me a PM and I'll be glad to help if I can!
Take care
Thanks for the comments and information Moonie. It's good to hear from someone with so much experience with Still's living a normal life. I hope the increased prednisone does knock this flare out quick and I can start scaling back down.
Hi again Jake,
Diagnosis for these things is a process of elimination and matching symptoms and markers with disease patterns, so I guess there is always some level of uncertainty. The WBC and Ferritin levels are two of the counts my RD uses to monitor my disease activity, I think I read about high Strep levels somewhere too.. but yeah, it does seem a bit of a coincidence that your dog had Lymes just before your flare... I'm not sure what measures they take to rule that out but I think Roxy posted something a while back - have you searched for 'Lyme's' with the search tool?
Also, you probably found this place already but just incase:
Laura
I would ask my RD to treat me for Lymes - the antiboitic might just get rid of the strep A and end this whole mess for you.
Lymes can be tricky to diagnose
Hey Jake
I, too, was diagnosed with Still's Disease. I was sero-negative for RA for years and went through an entire gambit of diagnosis of everything from Multiple Sclerosis to Primary Biliary Cirrhosis (liver disease). Finally, after years of doctors visits and countless medicine combinations, I tested positive several times for RA. Now my rheumy says I have RA.
I still have alot of friends with Stills. You should go to www.stillsdisease.org and sign up for the regular emails from the group. Very helpful bunch of people all who suffer from Stills and can relate to any problems you might be experiencing.
Of course you can ask me anything.
Take care,
Joe
I'm taking penicillin for the strep A but I don't think this would knock out Lyme. From what I've read Lyme can be very tricky to diagnose (even the Western Blot test can be inaccurrate) and to treat and you may need high-level antibiotics for an extended period of time (months/years). I'm not sure my RD would be cool with trying that but I'm going to ask.